Pat Bertram is the author of Grief: The Inside Story – A Guide to Surviving the Loss of a Loved One and Grief: The Great Yearning, “an exquisite book, wrenching to read, and at the same time full of profound truths.” Bertram is also the author of the suspense novels Unfinished, Madame ZeeZee’s Nightmare, Light Bringer, Daughter Am I, More Deaths Than One, and A Spark of Heavenly Fire.

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Embracing Life in the Face of Death

April 15, 2013 — Pat Bertram

I happened to come across a transcript of an interview where a woman had asked an advice columnist about confronting her cheating husband. The woman is dying of cancer with only a few months left to live, and though her husband is attentive, loving, and caring (he takes care of her in addition to caring for her), he is having an affair. When she first found out, she was heartbroken, but after a few days she realized he deserved to have someone help and support him during such an emotional time. Her question revolved around whether or not she should confront him. Should she tell him she understands? Should she let him know that she forgave him and didn’t want him to feel guilty?

Thousands of people left comments, most condemning the husband for having an affair, though some condemned her for her attitude, thinking she was too insecure to stand up to him. It does sound terrible, doesn’t it, the husband cheating on his dying wife? And maybe he is a cad, but as his wife said, “He has been amazingly supportive of me during this time. We have no kids, and as my health has declined, he has sat with me through endless doctor appointments, hospital stays, and sleepless nights.”

The advice columnist and the respondents to this article seemed to miss the salient issue, that death changes the world of those involved. We all know the stages someone who is dying undergoes — denial, anger, bargaining, depression, and acceptance. But what no one talks about is that when a couple is deeply connected, both people are affected, and in many ways, the person being left behind is the one who suffers most. You not only have the care of the person you deeply love, you have to watch them suffer, have to see them waste away, maybe even have to endure unpleasant personality changes caused by both the illness and the drugs they need to keep the pain at bay. And there is nothing you can do about it. You can make them as comfortable as possible, but nothing you do will ever change the facts of your life. S/he is dying, and you have to live.

Many things happen during this horrific time. As your spouse retreats from life, you retreat from death. This is not a matter of vows, but a matter of self-preservation. Too often, you feel as if you are also being drawn into death, and even though part of you doesn’t care, the more visceral part of you cares deeply.

At some point during a long dying, there is a disconnect. You disconnect from yourself, your life, your dying spouse. It’s not conscious, in fact often you don’t always know what is happening, but the truth is, distancing yourself emotionally from the unbearable situation is the only way you can survive. And your hormones go wacky. Sometimes your libido disappears; other times it goes into overdrive. Sometimes you are tormented by overwhelmingly painful arousals. Sometimes you fall in love or desperately need to feel someone’s arms around you, especially if your terminal partner cannot bear being touched any more. This does not mean you love your spouse less. It means your lizard brain, your body, your visceral nature are all screaming in the face of death and will do anything to keep you connected to life.

Although not everyone has an affair during a long dying, all of us in that situation have done things we were not proud of. As I wrote in Grief: The Great Yearning, “It’s been said that every behavior is a matter of survival, which I suppose is true in my case. I could feel myself fighting to live, to gain more autonomy, but that struggle manifested itself in impatience, irritability, and resentment. I think I was angry at his condition and took it out on him. When I remember all the years I swallowed my feelings in deference to his illness, it appalls me that at the end, I couldn’t sustain it. I am so not the person I thought I was!”

Soon the wife will be gone, and the man in question will reconnect to himself and life. If he is a good person who had to deal with an untenable situation, he will probably be wracked by guilt for what he did to his wife. He needs to know that she knew, that she understood and forgave him, but she doesn’t need to do it while she is alive. She can write a letter for him to find after she is gone. Because that is the truth. She will be gone. And he will still be here, dealing with grief, regrets, guilt.

Admittedly, I don’t know the entire situation, but neither does anyone else who responded to the article. But I do know what it’s like to try to live while someone is dying, and the truth is, you will never know what you are capable of, both heroic and base, until you yourself are trying to embrace life while someone you love deeply is, however unwillingly, embracing death.

But you’re not in the world of the dying. That is completely different from “normal” life. In normal life, yes, you’d be angry at your spouse, but if you were dying, I bet you wouldn’t be. Until you’ve been there, you can’t ever imagine how it changes both people involved.

Pat, your post is remarkable in many ways. I have been in the position you describe, watching my husband waste away and die… and I’ve written about the sensation of shutting down emotionally as things got worse. This was the only way I could keep functioning efficiently. I could not feel everything in the moment because if I did I would be a blubbering mess, which I couldn’t afford to be since I was his primary caregiver. There was a moment near the end when I reached out to a former lover. I just wanted to be held, to be close to someone who wasn’t dying. He talked me out of getting together (with great understanding and compassion) and I am grateful that he did. But I understand the dilemma you describe. People who have not been in this position should not judge because they have no idea. Thanks for this amazingly insightful post.

I am astonished at times, looking back, to see what those years of his dying did to him and to me. We used to argue good-naturedly about who had it worse. He contended I did, but I was sure he had it worse since he was the one in pain and dying. Afterward, I discovered the truth. I had it worse. He was finished with life and it’s terrible demands, yet I am still here, all by myself, dealing with the aftermath of his dying. No one should be judged by how they acted during a long dying, especially if they were the caregiver. In stories, dying always seems so romantic. In reality, not at all.

Wow Pat what an article!! I didn’t know anyone else has been faced with this except me. It’s so good to know that I’m not completely bad for my thoughts and some actions too while Jim had Alzheimer. Thank you. I can’t talk much about it but have guilt.

We bereft seldom talk about such things because it makes us seem so uncaring, but we need to at least allude to such situations, otherwise we will never know that our thoughts and actions are so common, a matter of survival, and not bad.

So wise, Pat, and so compassionate too! The person who has, by default, become caregiver, has a right to survive with their sanity/soul intact. Sometimes we are handed a task that’s just too damn big for us, and so we reach for help in ways that are not strictly “appropriate.”

Juliet, you’re so right, caregives do have the right to survive with sanity and soul intact. It’s interesting to me that often the person most involved — the one who is dying — is more compassionate about a straying spouse than onlookers who have no idea how soul-destroying such a situation can be.

Pat, I have read with great interest your posts. Separately, we’ve shared a similar journey; a journey most people will walk sooner or later. Ours seems to have occurred sooner. I read this post and the article referenced with equally great interest.

In no way do I wish to condemn or chastise the thoughts or actions in your post but I wish to offer a different perspective. (although in the interest of full disclosure, I would say that I strongly disagree with the husband’s affair)From my observation, the adulterous husband’s behavior is a form of withdrawing. I suspect that the broad statement from your post “distancing yourself emotionally from the unbearable situation is the only way you can survive” is also withdrawing. In one of my posts (a husband as caregiver) I have suggested that withdrawing is counter-productive and may be more painful long-term than engaging the dying person. To help caregiving men in this area I wrote a two page handout discussing this phenomenon which is being used in a few oncology treatment centers and support groups to encourage caregivers to lean into the experience of living an engaged life with someone with a terminal illness. I posted the handout in the blog and here is the link: http://wp.me/p2O3fs-K

Thank you, Jeff. I appreciate your input, especially since it’s from someone who knows what he’s talking about. It’s good that someone is disseminating information that might help others going through the same process. We hear so much about women being caregivers and not so much about the men who have to deal with the same tragic situation.

As for my article, I wasn’t condoning his behavior so much as trying to put a different slant on it after the fact. We caregivers do the best we can, and sometimes our best simply isn’t good enough. Sometimes, too, the one with the terminal illness doesn’t want to be engaged, but withdraws into him or herself, which leaves the caregiver in an emotional limbo of offering support but having nothing or no one to offer support in return, sometimes for years and years on end. Sometimes people don’t have faith to trust in. Sometimes we just muddle on the best we can and hope our loved one understands.

I am disappointed in Jeff Johnson’s judgement. I know in my case there was no way I could go on being “actively engaged” as my husband’s caregiver without going with him, after years of caring for him: my cup had run dry. In my case, I had children to care for and friends and relatives disappeared leaving me the sole responsibility. I think the most important thing is that the sick spouse remain well-taken care of until the end and that the well spouse does whatever they need to do to survive. There is very little about death that is pretty, and I think this situation is one of them.

‘I don’t care what they do, as long as they don’t do it in the street and frighten the horses’

For years Jeff (my Jeff) would tell me that when he got too bad I was to put him in some sort of nursing home, walk away from him, and forget he ever existed. He knew the trauma I’d have to deal with, and he wanted me to get on with my life. The one good thing about his being dead is that he can’t die twice, so never again will I be faced with such a decision. I was lucky — even though he was sick for many years, he could still mostly take care of himself. It wasn’t until the end that he had to go to a care facility. It tore me up (and I did visit him every day even though he’d told me not to), but I simply could not care for him any longer. The cancer in his brain and the drugs made him disoriented, and he seldom slept. That last morning he was at home, I woke to find him wildly rummaging in a kitchen drawer for a knife to cut off his canula, which he hated. (He was too disoriented to figure how to take it off.) Fortunately, he picked the wrong drawer, and was only rummaging through plastic bags.

For myself, I can’t judge anyone on how they deal with the situation. It’s soul and mind destroying, and in the end, as you said, you need to do whatever you can to survive despite their long dying.

web mamma, I am sorry any of us have had to go through the experience of losing a loved one. Intellectually, I know its a part of life. Emotionally, its much harder to accept. I’m sorry if my reply to Pat’s story seemed to imply some sort of abandonment while caring for your husband. There was no such intention. There are many circumstances that limit the ways someone can “actively engage”. Some of those limitations come about through the changing condition of our loved one while other conditions occur within us. On many occasions the limits within us are a result of the quality of our social support. I felt so much pain and sorrow as I read your words about friends and relatives disappearing. I am so sorry. It is in those times caregivers need the most from these people so we might in turn be the best we can for the one we are caregiving.

Grief: The Inside Story – A Guide to Surviving the Loss of a Loved One debunks many established beliefs about what grief is, explains how it affects those left behind, and shows how to adjust to a world that no longer contains the loved one. “It is exactly what folk need to read who are grieving.”(Leesa Heely Emotional/Mental Health Therapist & Educator ).

Other books by Pat Bertram

Available online wherever books and ebooks are sold.

Grief: The Great Yearning is not a how-to but a how-done, a compilation of letters, blog posts, and journal entries Pat Bertram wrote while struggling to survive her first year of grief. This is an exquisite book, wrenching to read, and at the same time full of profound truths.

While sorting through her deceased husband’s effects, Amanda is shocked to discover a gun and the photo of an unknown girl who resembles their daughter. After dedicating her life to David and his vocation as a pastor, the evidence that her devout husband kept secrets devastates Amanda. But Amanda has secrets of her own. . .

When Pat’s adult dance classmates discover she is a published author, the women suggest she write a mystery featuring the studio and its aging students. One sweet older lady laughingly volunteers to be the victim, and the others offer suggestions to jazz up the story. Pat starts writing, and then . . . the murders begin.

Thirty-seven years after being abandoned on the doorstep of a remote cabin in Colorado, Becka Johnson returns to try to discover her identity, but she only finds more questions. Who has been looking for her all those years? And why are those same people interested in fellow newcomer Philip Hansen?

When twenty-five-year-old Mary Stuart learns she inherited a farm from her recently murdered grandparents -- grandparents her father claimed had died before she was born -- she becomes obsessed with finding out who they were and why someone wanted them dead.

In quarantined Colorado, where hundreds of thousands of people are dying from an unstoppable, bio-engineered disease, investigative reporter Greg Pullman risks everything to discover the truth: Who unleashed the deadly organism? And why?

Bob Stark returns to Denver after 18 years in SE Asia to discover that the mother he buried before he left is dead again. At her new funeral, he sees . . . himself. Is his other self a hoaxer, or is something more sinister going on?